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Sicker Than Sickle Cell Foundation

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The disorder affects the red blood cells which contain a special protein called haemoglobin (Hb for short). The function of haemoglobin is to carry oxygen from the lungs to all parts of the body. People with Sickle Cell Anaemia have Sickle haemoglobin (HbS) which is different from the normal haemoglobin (HbA). When sickle haemoglobin gives up its oxygen to the tissues, it sticks together to form long rods inside the red blood cells making these cells rigid and sickle-shaped. Normal red blood cells can bend and flex easily.Because of their shape, sickled red blood cells can't squeeze through small blood vessels as easily as the almost donut-shaped normal cells. This can lead to these small blood vessels getting blocked which then stops the oxygen from getting through to where it is needed. This in turn can lead to severe pain and damage to organs.Everyone has two copies of the gene for haemoglobin; one from their mother and one from their father. If one of these genes carries the instructions to make sickle haemoglobin (HbS) and the other carries the instructions to make normal haemoglobin (HbA) then the person has Sickle Cell Trait and is a carrier of the sickle haemoglobin gene. This means that this person has enough normal haemoglobin in their red blood cells to keep the cells flexible and they don't have the symptoms of the sickle cell disorders. They do however have to be careful when doing things where there is less oxygen than normal such as scuba diving, activities at high altitude and under general anaesthetics.If both copies of the haemoglobin gene carry instructions to make sickle haemoglobin then this will be the only type of haemoglobin they can make and sickled cells can occur. These people have Sickle Cell Anaemia and can suffer from anaemia and severe pain. These severe attacks are known as Crises. Over time Sickle Cell sufferers can experience damage to organs such as liver, kidney, lungs, heart and spleen. Death can be a result.Another problem is that red blood cells containing sickle haemoglobin do not live as long as the normal 120 days and this results in a chronic state of anaemia. In spite of this, a person with sickle cell disorder can attend school, college and work. People with sickle cell disorder need regular medical attention particularly before and after operations, dental extraction and during pregnancy. Many hospitals arrange follow-up appointments and it is advisable to discuss with the doctors questions concerning schooling, strenuous exercise, family planning, suitable types of employment and air travel. When a person is found to have a sickle cell disorder it is important that all members of the family be tested. They will not necessarily have sickle cell disorder but may be healthy carriers of a sickle cell trait.

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Sickle cell anemia is a hereditary disorder that mostly affects people of African ancestry, but also occurs in other ethnic groups, including people who are of Mediterranean and Middle Eastern descent. More than 70,000 Americans have sickle cell anemia. And about 2 million Americans - and one in 12 African Americans - have sickle cell trait (this means they carry one gene for the disease, but do not have the disease itself).Sickle cell anemia occurs when a person inherits two abnormal genes (one from each parent) that cause their red blood cells to change shape. Instead of being flexible and round, these cells are more rigid and curved in the shape of the farm tool known as a sickle - that's where the disease gets its name. The shape is similar to a crescent moon.What Is Sickle Cell Anemia? Sickle cell anemia is a blood disorder that affects hemoglobin (pronounced: hee-muh-glow-bin), a protein found in red blood cells that helps carry oxygen throughout the body.Red blood cells with normal hemoglobin (HbA) move easily through the bloodstream, delivering oxygen to all of the cells of the body. Normal red blood cells are shaped like doughnuts with the centers partially scooped out and are soft and flexible.Sickle cell anemia occurs when an abnormal form of hemoglobin (HbS) is produced. HbS molecules tend to clump together, making red blood cells sticky, stiff, and more fragile, and causing them to form into a curved, sickle shape. Red blood cells containing HbS can go back and forth between being shaped normally and being sickle shaped until they eventually become sickle shaped permanently. Instead of moving through the bloodstream easily, these sickle cells can clog blood vessels and deprive the body's tissues and organs of the oxygen they need to stay healthy.Unlike normal red blood cells that last about 4 months in the bloodstream, fragile sickle cells break down after only about 10 to 20 days, which usually causes anemia. Anemia (pronounced: uh-nee-mee-uh) is what happens when the body's number of red blood cells (or amount of hemoglobin) falls below normal. People who are anemic often feel weak and tire more easily.People with sickle cell anemia can also experience complications from blood circulation and infection-fighting problems. These include a higher risk of certain infections and stroke as well as a condition called acute chest syndrome, which is caused by infection or trapped red blood cells in the lungs.Sickle cell anemia is not contagious, so you can't catch it from someone else or pass it to another person like a cold or other infection. People with sickle cell anemia have inherited two sickle cell genes, one from each parent. A child who has inherited the sickle cell gene from only one parent will not develop the disease, but will have sickle cell trait. People who have sickle cell trait don't have sickle cell anemia or symptoms of the disease, but they can pass the sickle cell gene to their own children.Because people with sickle cell trait don't have the disease, they may never discover that they carry the gene. That's why it's recommended that teens who are unsure of their sickle cell status ask their doctors about testing. The National Institutes of Health recommends that all newborns be screened for sickle cell disease, and testing at birth is now required in almost every state. This helps infants with sickle cell anemia get the care and treatment they need right away.

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Signs and Symptoms Teens with sickle cell anemia may develop jaundice (pronounced: jon-dis), a condition that results from the high rate of red blood cell breakdown. Jaundice can cause the skin and the whites of a person's eyes to develop a yellowish tint.People with sickle cell anemia also may have bouts of pain in the chest, stomach, arms, legs, or other parts of the body. This is caused by sickle cells blocking blood flow through the blood vessels. Feeling tired and having trouble fighting infections are also common among teens with sickle cell anemia, and they may grow more slowly and reach puberty later than other teens.Periods of pain are commonly referred to as crises, which vary in their severity, how often they happen, and how long they last. Whereas one person may have only one sickle cell crisis a year, another may experience crises more often. Crises may be brief, or may last hours, days, or even weeks. Symptoms can develop in any body organ or tissue and include aching arms, legs, hips, and shoulders. When people with sickle cell disease get acute chest syndrome, they may have severe chest and abdominal pain, fever, cough, and trouble breathing.What Do Doctors Do? To diagnose sickle cell anemia, doctors use a blood test called hemoglobin electrophoresis (pronounced: hee-muh-glow-bin eh-lek-truh-fuh-ree-sis) to look for HbS in a person's blood.There is no cure for sickle cell anemia, and it is possible for some people to die from the disease (although most young people with sickle cell anemia don't die). Doctors can provide treatments that help prevent complications from the disease, though. Folic acid, a vitamin that helps the body produce new red blood cells, is often prescribed for teens with sickle cell anemia. Pain medications help relieve the symptoms of crises. And kids and teens who have sickle cell disease often take penicillin or other antibiotics to help fight infections.Some crises can be managed at home with pain medicines, rest, and extra fluids. But if a crisis is especially intense, the person may need to go to the hospital for intravenous (IV) fluids and stronger pain medications. People with sickle cell anemia may also use oxygen to help ease symptoms during a crisis or an episode of acute chest syndrome.Teens with sickle cell anemia may need to get transfusions of healthy red blood cells to help carry oxygen to the tissues of their bodies more effectively.Scientists are constantly researching ways to help people with sickle cell anemia. Several recent drugs on the market, such as hydroxyurea, have helped reduce painful crises and episodes of acute chest syndrome in adults with the condition. These drugs have also decreased the need for hospitalization. Scientists are also testing these and other drugs to see if they work for kids and teens. In rare cases, people with severe sickle cell anemia may be given a bone marrow transplant to help them produce healthy hemoglobin.Scientists are also studying gene therapy as a good treatment for sickle cell anemia. One day, doctors may be able to stop the disease by changing or replacing the abnormal gene that causes sickle cell anemia.

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What Can You Do to Stay Well? With the right precautions, teens with sickle cell disease can do most of the stuff other teens do. To stay as healthy as possible, people with sickle cell anemia should take these steps:Eat a balanced, healthy diet. Take vitamins, including folic acid supplements, as prescribed. Drink plenty of water to prevent dehydration. Avoid extreme cold or heat. Exercise regularly, but in moderation. Exercise is important for staying healthy, but overdoing it can trigger a crisis in some people, particularly if they become dehydrated, overheated, or exhausted. Get plenty of rest. Avoid alcohol, drugs, and smoking, which can aggravate sickle cell disease and its symptoms. Some people with sickle cell disease are prone to lung problems, so smoking is particularly risky. Avoid places low in oxygen. (For example, it's not a good idea to go hiking at high altitudes or spend lots of time swimming under water.) Prevent serious infections by contacting your doctor as soon as illness symptoms start. Be sure to get any immunizations (such as pneumonia and flu vaccines) that the doctor recommends. Learn as much as you can about the disease and see your doctor regularly to help prevent complications. There are some limits that people with sickle cell disease may need to put on their lives, but with the help of doctors, friends, and family, teens with sickle cell anemia can manage the disease and live their lives to the fullest.